Struggling with DD who has autism [Title edited by MNHQ]

The sooner that we go back to different types of ASD having different names, the better IMO. It seems that those adults who have what used to be referred to as Aspergers, have no idea of the difficulties of parenting (or having) the more profound types of the condition.

My heart breaks for the parents of those with profound or severe autism. Life is increbily difficult for them, but since the levels were all lumped together as autism, they're unable to voice their distress. I've watched it happen over the years. The parents of the children I taught used to be able to go to groups where they got support and empathy. Now they get judged early on and stop going.

I appreciate that adults wooth Asperger's level autism have their own difficulties and don't want to be seen as disabled. But they should not be closing down conversations about profound autism.

Congratulations, you receive the fantastic parenting award. Clearly a thread where parents are struggling is not for you.

She wouldn't dare bite me or anyone else.

That's nice. Yes, it certainly sounds as though your child is very different to mine.

Jeez. My autistic adhd teen has never bitten or hit anyone either, he hasnt had a meltdown since he was about 3, he's always been a queit lad. That's just how he built though, he's a polite, rule abiding kid. His cousin has the same diagnosis and is lucky to have made it through his teens without going to prison. It really isn't because of my superior parenting or anything it's just that all kids with asd are different. My ds and his cousin have been opposites since they were toddlers. His cousins mother has had to work so much harder than me parenting her child.

I can't relate to lots of the posts on this thread but to come on here and belittle everyone else's stuggles is really poor form, not to mention tempting fate considering your dd hasn't even been through puberty yet.

Well, congratulations, @MadameMackenzie, you must be an amazing parent and not just someone lucky enough not to be experiencing the reality of parenting a child with a profound disability.

My DD has Down’s syndrome, autism and ADHD. Her behaviour at home and at at school is extremely challenging. I’m covered in bruises and scratches. She can’t go out and do the things she loves doing because of extreme anxiety and sensory defensiveness. We don’t get to go out either.

My mum died last week. We can’t even have a family get-together because it would be too stressful for DD (and, by extension, us). We go nowhere and do no thing. So yes, I love my daughter passionately but fucking hate autism and what it does to her and to our family.

@MadameMackenzie can't believe you're on a thread where posters are saying how broken an distressed they are by being bitten and assaulted and going without sleep and coming on judging them, then saying you've never experienced any of that?!

@MadameMackenzie i took a very gentle approach to my son and his very severe autism. In fact I didn’t even send him to school because I knew what I wanted for him and I knew I was the person to do it. In fact I think I was doing the low arousal approach to autism long before a name had been made up for it.

Despite the severity of my sons autism as well as the fact he was non verbal till about 8 years old we didn’t really know what a meltdown was till he reached puberty. And like you I thought I had it cracked. I thought the work I’d put in on him as a child would carry him though life and all things considered he’d be fine.

And he was till he reached puberty when within months it all started to go wrong and everything we thought we’d worked really hard to avoid came at him (and us) like a tsunami. You see his brain had different ideas to us and at 31 he now has an additional 3 dx in addition to the Kanners Autism. He also has severe anxiety. At times he can self harm so badly he can knock himself senseless and it takes 4 of us to restrain him. He actually broke his own arm once and has had stitches in his head numerous times. And I’ve also been in casualty a few times as well.

Mind you he does have a form of epilepsy that does cause aggression instead of normal seizure activity but for the most part his meltdowns are caused by his brain being way way more powerful than the people around him who work. round the clock trying to keep him happy and on an even keel. And work we do, to the extent that even some sweat on his upper lip would have us alert to him perhaps not being comfortable and our every 15 minute observations of of him going up a level.

when my son was younger he travelled the world, business class, that’s how well he was, all things considered. He loved steam trains and every year after Christmas he’d look for places to go and come summer off we went. Then we came home from one of our trips and after a particularly bad meltdown a few days later my family who are pilots said to me - mama, we love DB but his traveling days are over because if this happened in mid air it would be a disaster for him. And they were right.

Nowaday there’s no traveling and he couldn’t even be let out the front gate alone which is why we live with a very high wall and discrete cameras on every corner of the roof.

Anyway, I just wanted you to know this because it’s very early days for you on this journey. And whilst I hope your daughter always has the life she does now, you really do have to take onboard the fact that it can all end up being very different despite your efforts.

You don’t know what the OP (and others) face in a day. And yes, it is a 100 times worse for the person who’s autistic. But you have a lot to learn and if you can’t be compassionate towards a woman who’s had her own meltdown perhaps it would be better to not so anything at all.

And no, being compassionate doesn’t mean you have to agree with how something was handled.

Yes. You have your child. No one else’s.

madame how do.you walk away when you're being hit, they're trashing the house or about to do something dangerous?

I was suggesting that you start a thread for people like yourself who’ve objected to this thread and couldn’t understand the OP was having her own meltdown and instead decided to criticize and in your case show off your parenting credentials.

My suggestion was that you called your thread something along the lines of ‘we’re lucky we don’t know half of it’ or ‘haven’t walked even a hundred yards in their shoes’.

Do you realise the OP's daughter would come under Asperger's if it was still used? She doesn't have profound/classic autism. She's verbal. You're actually saying on the OP's thread that she has no idea of the difficulties of parenting a child with autism.

This is very common. People thinking that unless someone has a learning disability along with their autism, they are not autistic enough to be autistic.

This is very common. People thinking that unless someone has a learning disability along with their autism, they are not autistic enough to be autistic

Equally, there are those who are on the spectrum who are quite offended people don’t differentiate between the two.

"No one is criticising people with autism. We are simply at the end of our tethers and exhausted through lack of support."

Of course they are. There is a significant difference between saying, "I'm exhausted by x or y behaviour," "I'm suffering due to a lack of support," "My life would be so much easier if my child did or didn't do x or y," or "I'm sick to death of being kicked or pinched," and saying, "I fucking hate autism."

This is because many autistic people, including myself, cannot separate autism from themselves in the same way that one might separate an objectionable behaviour or belief from oneself. Autism is inextricably linked to the individual: autistics cannot be anything other than autistic. So I don't think "I fucking hate autism" means anything other than "I fucking hate autistics." Just as I don't think "I fucking hate homosexuality" means anything other than "I fucking hate homosexuals."

This thread is extremely upsetting because it makes me worry that the people I care about might wish I were dead or someone else. I'm usually confident that people genuinely care about me. But this thread makes me wonder if I'm missing something or if it's all a ruse.

I'm confident that once I leave MN, these feelings of fear and dread will fade. But I worry about other autistic readers who are more emotionally vulnerable, and I imagine my autistic children reading this, and I despair. I tell them I don't think or feel they're 'less than,' but will they believe me when they read about other parents' 'secret' feelings of hatred toward their autistic children?

My ten-year-old son is nonverbal and intellectually disabled. He'll need lifelong care. Of course, the world can be more difficult for him to navigate and some of his actions are more difficult to manage. Of course, he suffers as a result of his - and our - limited understanding and successful communication at times. Of course, it's heartbreaking to see others reject him. Of course, I'm absolutely exhausted and worried all of the time about what to do for the best now and in the future. However, saying that I "fucking hate autism" would be cruel and absurd. It's too broad a statement to be anything but hateful and discriminatory.

I accept and love my children as they are, and I know many other parents like me. In regards to non-disabled kids, this kind of acceptance appears to be the norm. It's only when it comes to disabled children that it suddenly becomes controversial, and posters are accused of virtue signalling when they point it out. This is a great shame and says more about the high level of ableism displayed on these boards than the intentions of posters like me.

The criticism of the hateful language used by the OP and others has little to do with 'toxic' positivity. Nobody has said that parents shouldn't talk about their difficulties or concerns. However, there's a massive difference between stating that you find a particular behaviour/s difficult and saying you hate a whole state of being or class of people. This doesn't seem difficult for people to understand when it comes to other groups. However, hate and resentment against autistics appear so entrenched that people act surprised when the obvious is pointed out with regard to them.

OP, it sounds like you hate autism as much as I hate that you hate autism.

For the autistics reading this, the posters here do not represent all parents of autistic children. I see you, and you're more than fucking acceptable to me.

I love my child more than anything but I do hate that he struggles and that is a direct result of his disorder. That's how I feel and that's basically how i would interpret the OP.

I don't know if my 10 year old DD is autistic or not, but she puts so much pressure on me / on us if she wants something or doesn't want to do something so we are all affected.

Eg last night her sister with a cold asked for a blanket she was leaning on but not using. She refused to give it but also kept making noise and disturbance because we wanted to watch a film.of course some moaning is fine but she goes on.and on and needle's us and pushes every button until someone shout's.
We went out at the weekend and I ended up crying at one point because she didn't want to be there and had just gone on and on and on about it.

Mine won't wear any night wear, neither child has they get too hot.

I couldn't ever say...brush your hair and leave it.
I have to keep on and on and it turns into. Battle.
I can't ever just smoothly ask her to anything!

This is interesting - dd (20) has been discussing not having kids in the future because autism, ADHD etc can become more pronounced with successive generations? She has dyslexia, ADHD, GAD & social anxiety and we suspect autism too (will be going for a private assessment) and she really struggles with life at the moment as an 'emergent adult' whom society expects to achieve certain grown up milestones. She can't meet her full potential as a bright girl, and has quit Uni twice and can't handle responsibility or pressure so sticks to entry level jobs (well below her abilities) which she quickly tires of. She feels a failure (which she isn't) and is frustrated and miserable. She doesn't want to have dc in the future and pass on these highly heritable conditions

If it's hard for her, so I can't imagine how some parents in this thread cope with their severely autistic children. Heart breaking and knackering

This thread is extremely upsetting because it makes me worry that the people I care about might wish I were dead or someone else.

Can you explain where you are getting this dramatic ideas from? Who has wished anybody dead? You may not mean it to but your post reads as quite manipulative tbh.

Just to balance it out; personally speaking, it's not all doom and gloom. MOST of the time I really enjoy parenting my son, appreciate his 'little' achievements and feel lucky on the super rare occasions he shows any kind of affection !

Having read some of the recent posts I will probably have offended @Thenose . Just to qualify - my dd feels unhappy and finds life very difficult at times so she doesn't want to pass on, what she considers to be a burden, to her future children. No hatred of autistic people or considering them lesser in any way

I hate autism. I am autistic and so are my children 2 of which are very poorly because of it. I hate how it has blighted our lives. I thought we were handling everything ok too during the earlier years but our lives have been turned upside down during the teenage years, it’s beyond awful.

I think it’s unfortunate that people feel it needs to be said. And quite honestly Id never let anyone put me in a position where I felt had to say that I loved my son or enjoyed being his mum. People can think what they like.

Lollipoprainbow: “She has a couple of NT friends and I find myself wishing she was like them”

ThisMustBeMyDream: “I fucking wish I could work full time and not have a child with autism and adhd!!!”

Puffalicious: “I find myself wishing he was neuro-typical most days”

Whatnextiwonder: “if I knew then what I know now. I wouldn’t have had them.”

Lollipoprainbow: “please do tell me the strengths you are talking about because from where I'm standing I can't see any????”

Lollipoprainbow: “I'm not sure I would have had a child if I'd known they'd be autistic”.

Lollipoprainbow: “I find myself wishing she was NT on a daily basis”

Can you really not understand why comments like this might make an autistic person question whether their loved ones wish they hadn't been born or were a different person?

@LimitIsUp, your post doesn't offend me at all.

I agree that Aspergers and classic autism are two completely different kettles of fish (ds has Aspergers) and lumping everyone in together helps no one. There are huge variations even within each group and to not be allowed to use any distinguishing language is fucking ridiculous - the language police on here alone make my blood boil.

Some people with Aspergers might not want to be seen as disabled but it doesn't mean they aren't, they are and they are often affected more than they probably even realise. The world isn't designed for people with ASD and trying to be what the world expects is absolutely exhausting. For people with Aspergers to suggest they are not disabled (because they feel they are coping at that time perhaps) does other people with Aspergers a huge disservice IMO. It's like someone in a wheelchair feeling they are not disabled - it's obvious to everyone else but it's their normal so they know no different and at that time may be coping well. But to tell everyone they were not disabled and so the world doesn't need to make any allowances or put in place any aid or support would be damaging for people in wheelchairs as a whole.

However classic autism is another world, I can't imagine the difficulties for the child and the parents and I would never judge anyone for feeling they are absolutely not coping. OP doesn't have a child with classic autism but that doesn't mean she doesn't have a difficult time, less difficult than other perhaps, but still difficult in it's own way.

OP can you accept that your dd is messy and allow that as long as it stays in her room? This is what I do with ds and it makes life easier for both of us. Then in school hols when he has a lot of time he will tackle the mess and tidy things with a bit of prompting.

But it's not wrong to wish your child wasn't disabled so that they could have an easier life and so you didn't spend every night worrying about how they were going to manage when you were gone and because you have no real clue how to help them because no one has ever given you that information. Many autistic people wish they weren't autistic - is that wrong too because it could offend other autistic people?

If an NT person of here said their child was difficult and they were overwhelmed and sometimes wished they hadn't been born then would every NT person wonder if their parents didn't love them because they were difficult? No. because every relationship is different and complicated and personal. Honestly the things you are throwing out there are ridiculous and unless you are autistic and have an autistic child you should stop trying to stand up for something you don't appear to understand.